Saturday, September 26, 2009

We arrived last night, with only one small episode/seizure so I considered that to be a good trip. Now on with my post.

* I do not like to travel...well not in a car for two days with two adorably loud children.

*It's great to see my in laws they are great and I love my SIL who is on her way but is extremley loud too, hmm wonder where my kids get it? I know, I know all kids are loud but these little rascals take the cake!

*My FIL's foot is so cold, can't be good. Not sure what I was expecting.

Friday, September 25, 2009

We stopped in a hotel, well more of a motel last night but they had a small swimming pool that helped my aching and burning skin.All in all, it's been a good trip. We still have both kids and hubby is still with us.

So let's see if we all make it the second half of the trip.

FIL is the same, still in lot a lot of pain and surgery set for Monday.

Thursday, September 24, 2009

I had asked for prayer for hubby's dad earlier this week. We knew he had a blood clot in his leg and that they were trying to get his diabetes under control before they did anything. Well we got the call today and things have taken a small turn for the worse. So Roo and I went to Walmart to buy supplies then came back home and for the last two hours I have been packing. I do not know how people pack for more than two children, we would have to rent a trailer :)

It's a 16 hour drive, I would love to be able to drive the whole way through but I just don't think my body nor my patience will let me. So we are planning on leaving early in the morning and stopping halfway late afternoon to stay over in a hotel.

The surgery is scheduled for Monday to remove the blood clot or clots. I don't know if they don't know how many clots there are right now or if it's just getting lost in translation.

It was funny today, not ha ha funny, but the other kind, you know that nudge you get to do something but you don't know why. Well Wed. are usually my complete day of rest. Mondays I clean all day, Tuesday swim class and school then rest wed and repeat the same. But I felt the nudge early today to do laundry and it's not even usually my thing to do. My aunt loves to do laundry, I have told you she's insane right?

So that is what I spent my day doing every stitch of dirty laundry is now clean and most of it packed neatly away in our suitcases. Thank you God for the little nudges.

I do have several prayer requests:

Please pray for my INL that God will give thempeace.

Our trip there and back, that I stayseizure free and my body can withstand the trip and still be able to help and care for everyone once we arrive.

Pray for my husband, I know he is so scared of losing his father. He says that when he sees his father around our child that it's a different side that he never saw growing up. I hope God lets them get their unfinished business taking care of before anything does happen to him.

My mom, she has fallen back into the state she was before she went to the hospital. She's loopy and sleeps too much and can't feed herself again. But she goes to the doctor on Monday. It's still hard to leave.

That we make there it there with two children and return with two and not have to air ship one back. They are not the best travels :)

Oh and one more, don't close the screen now just one more, my family has all the sudden come down with bad coughs and colds. It started with Ruben, then Rissa, now Jose. I'm hoping it won't come my way, maybe I will get one of those masks for the trip.

Thank you my dear friends, for taking the time to visit, to pray and support and uplift me in ways you may never know.

Monday, September 21, 2009

Fibromyalgia with Seizures, it's not common for these two to go together but if Fibro is left untreated over the years you can start to have seizures because of the stress it puts on your body, or so my doctor tells me. I'm still researching.

Fibromyalgia (pronounced fy-bro-my-AL-ja) is a common and complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.

Fibromyalgia, which has also been referred to as fibromyalgia syndrome, fibromyositis and fibrositis, is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue.. For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities

Fibromyalgia causes you to ache all over. You may have symptoms of crippling fatigue -- even on arising. Specific trigger points or tender points on the body may be painful to touch.

Some patients with FMS have pain and achiness around the joints in the neck, shoulder, back, and hips, mine occur in the neck, shoulder, arms and shins accompanied by a burning pain almost as if my skin is on fire. Other fibromyalgia symptoms include:

For some patients, pain improves during the day and increases again during the evening, though many patients with fibromyalgia have day-long, unrelenting pain. Pain can increase with activity, cold or damp weather, anxiety, and stress. For me My pain is not so bad in the mornings but does increase throughout the day and depending on what activities I do.

It can be severely crippling if left untreated for years which is exactly what happened to me in April. In the past I have been diagnosed with RLS, restless leg syndrome, chronic migraine headaches and have has on going periods of numbness in my hands and feet and had a really bad seizure in 2001.

FINALLY, it all makes senses to me. I've had Fibromyalgia for a really long time but just ignored it until all the stress we went through in Jan with the ice storm where my mom lives and having to get her out of there and then deciding they would live here. My husband and I had to pack up their very big house by ourselves, the house was big and stuff with as much stuff at is possible could be some rooms were floor to ceiling. Hubby and I went through, boxed packed and moved it all except for help wit the major appliances. Then the stress of caring for my mom, using the Hoyer lift to get her up each day my body could not handle it and the Fribo symptoms came on full force, crippling even until the pain brought on my tremors and seizures.

I was relieved to get a diagnosis finally, but there is no cure, well man made cure, that is. I just have to take my meds, which seems to be increasing by the month, and watch how hard I push myself.I had come across this in my research but didn't think I was right about it because I didn't think Fibro could be so very painful. Doc said it can be one of the most painful things out there.

Unfortunately , because there is no specific tests some doctors don't even believe it exists. I think this is becoming less of the case, with more education and more medications coming out that have been shown to help people control the symptoms of Fibrymyalgia.

Would love to hear from you if you have dealt with this or know someone that has.Thank you to all those who have followed me on this journey, it's only just beginning and I know you guys will be there to hear my praise reports, rants, and whatever else God has in store for my family.

Another week and this time I feel I am having to really think about what I am grateful for, not because there aren't a thousand or more things to praise Him for but just because when Satan see's we are giving God all the Glory he steps in and wants to throw us off balance. I will not allow that to happen this week. I don't know what the future holds for my family or those very close to it but I do know WHO holds the future. So for today I will give Him the praises He deserves for all that He has already done.16-26

* For God loving Principals who will hold you and pray while you are having a seizure in her office.

* My mother's health.

* One of the most Foxiest creatures God has ever made and the privilege to save her from a kill shelter last week. (will post pics soon)

* My daughter telling me how beautiful I look as soon as she sees me open my make-up bag, even though she doesn't realize I have not put a single thing on my face.

* Being referred to as Roo's mom at school and having all the 8th graders tell me just how cool he is.

* Rain

* A man that shops with me and goes and grabs a wheel chair when I'm getting too tired to keep shopping, so that I can finish my list before the week begins.

Saturday, September 19, 2009

I am working on my diagnosis post. I know you all are anxious to hear what it is and I promise it will be done soon. There just seems to be so much to say and so many other things going on over here right now.

But I will say here that while extremely painful and does not have a (man-made) cure, it's not life threatening. It of course has been life altering but maybe now with the right meds and knowledge it won't have to be sooooooooooo life altering.

I would have had it up already had I not had a seizure at school on Friday. I was working in the office and my body decided to have a seizure in the principals office of all places. She was great about it though, she was talking to me and praying at the same time. She's awesome.

Prayer Requests if you feel lead:-Mom seems to be worse since we got her back from the hospital.

-Hubby's dad has a blood clot in is leg and also has diabetes, which makes it all more complicated. The docs say if they get in and find 2 blood clots they will have to amputate his leg. They live about 16 hour from here so Hubby is going to try and speak with the doctors himself over the phone before we head that way. But it's pretty certain his dad will have to have surgery.

-My best friend of 12 years and Roo's God Mother, also the one who visited in May when I was really sick and painted Roo's room, has not been feeling well lately. Her mother is a breast cancer survivor as is her aunt, her sister had ovarian cancer at the age of 28 and had to have a total hysterectomy. MeeMee went to have a mammogram and they found something, she is only 30 so usually it would not be a big deal but with her history it's all pretty scary for all of us who love her and for herself too, though she's good at hiding her true feelings from everyone but me!

They will get a biopsy on Sept. 30, so if you all would keep her in your prayers. Not only is she my Best friend, she is the funniest, most selfless, compassionate person I have ever known, and she is also an awesome nurse herself.

I have asked God several times this week to please stop this ride I frankly want off! He is not listening and He knows best so I will have to trust HIM!Hope you all have a good weekend and my diagnosis is coming soon, it just doesn't seem to be so important after the request I listed here.

Wednesday, September 16, 2009

*A thankful daughter who is glad to have her mother home, thank you God.

*A daughter who never thought she would have to put diapers on her mother at the age of 60.

*A patient who finally got a diagnosis after 6 months of doctors making me think it's all in my head. (I will post about it tomorrow or Friday, promise :)

*A wife and Child of God ,whose husband is Catholic, searching for the truth and finding out some of what I have been taught all my life is not true.

*A mother who loves her son with all her heart but is so tired of hearing about Star Wars (I thought it was just a phase like Thomas the Train was but we are going on 2 yrs of this and I'm ready to move on :)

*A blogger who is amazed at all the friends she has made and encouragement she has received since starting this blog.

So who are you?Confession is good for the soul.Tell me in a comment or post it on your blog & let me know.

Sunday, September 13, 2009

We thought of you with love todayBut that is nothing newWe thought about you yesterdayAnd days before that tooWe think of you in silenceWe often speak your nameNow all we have are memoriesAnd your picture in a frameYour memory is our keepsakeWith which we’ll never partGod has you in his keepingWe have you in our hearts.

Kim, it does not matter how many years go by, you will never be forgotten. Thank you for all you taught me my first 16 years of my life and for all you taught me in your death.

Saturday, September 12, 2009

*Mom is still in the hospital. She has been moved to the PCU because she was getting worse and they thought she had a bacteria infection in her blood. They keep doing blood cultures. On three mom has tested positive for an Infection in her blood. Two have come back negative. So they are doing more tests and hoping it's not a blood infection.

*I felt normal for the first time in forever this morning when the 4 of us went to the soccer field to watch Roo play.

*I get the whole God is in control thing, but I really wish HE would take my advice just this once. I'm not ready to lose my mom.

*Tomorrow is my sisters birthday and this is the last place I want to be. We share the ICU waiting room and I know all to well what those families are going through and honestly while it should make me want to pray for them it makes me want to find the nearest exit.

*My son threw a penny in the wishing well down stairs and I asked him what he wished for, thinking it would be for Nana to get better, nope he wished for more Star Wars movies. Oh how I love that little guy, he said he didn't have to because God would take care of Nana.

*Soccer is just a game, I know parents want their children to win but for the love of Pete it's just a game.

Thursday, September 10, 2009

Thank you all for praying. I read your comments while waiting for them to find mom a room and they all really touched my heart. Shayla, you're right I do believe that verse was meant for me. It amazes me how God uses all of us in blog land to lift each other up with our prayers, words, songs and scriptures.

Mom's blood pressure and oxygen levels were dangerous low. She also has a bad kidney infection. They pumped antibiotics and fluids in her. She is still not eating or drinking and keeps saying she feel weird. So I have no idea what may be wrong or if's it's just the kidney infection. Her blood pressure is still low but not dangerously so.

Thank you again for your prayers, I did not fall apart. As soon as I stepped into the ER yesterday I immediately went in daughter protective medical mode. My aunt doesn't always ask the right questions and or push the way I do. She's a little more laid back and quiet when mom's in the hospital but I know I can't be because we have had too many mistakes made by doctors and nurses.

Please continue to keep us in your prayers.I specifically needs prayers that my symptoms would stop at least until we can get her home. My aunt stayed with her last night and I am going to relieve her at lunch. I have to go shopping and run a bunch of errands that can't be put off any longer. And my legs are trying to give out on me, and my hands start trembling now and then. And my skin feels as if it's on fire. Usually that means a seizure is right around the corner but I'm not claiming that today. I know God can stop these symptoms dead in their tracks and I know HE will get us through this.

Every time mom goes into the hospital my thoughts go to my sister. How I wish she were here to make this all easier to carry. Sunday is her birthday, she would have been 35. On the way back from the hospital last night, I couldn't stop thinking about her. And so I let myself go there for the 10 min ride and had a little cry.

When I got home I went over to my neighbors house to let them know how mom was and when I got to their door I saw this beautiful tall rose bush full of beautiful pink roses. Now I have went to my neighbors door a hundred times and there has never been that many roses on that bush. I really haven't ever noticed them before.I immediately get chills and tell my neighbor when he comes out how beautiful they are. He immediately takes out a pocket knife and cuts the fullest most beautiful rose that is there. (He did not know my sister and knows nothing about her, not even her name).

Pink roses were my sisters favorite. I buy them every year on her birthday.Now it's sitting on my table. A reminder from God that HE sees my pain, he saw the tears fall in the car, HE sees the void that grows a little deeper when mom is sick.And HE reminds meshe's not that far away after all.

Tuesday, September 8, 2009

I thought I would update you all about my health and what is going on in my life. I've gotten away from posting specifically about my health only because I don't want this blog to be taken over by that. I don't want my life to be taken over by my health issues. I want to LIVE and I want to document the living part more than the health struggles.

For those of you who are new and may not know what I am talking about I will try to fill you in quickly. If you are not new you may skip the green part. :)

The last few years I have had periods were I would lose all feeling in my hands and feet and couldn't do small tasks such as button a shirt. It usually would not last for more than a week. We didn't and don't have insurance so I just let it pass. Then in April of this year after losing about 40 pounds in 2 months it started to happen more frequently and I would be in severe pain some days. It finally got to the point where I had no feeling in my legs, could not walk and began to have seizures. I went to the ER and then was admitted to the hospital then transferred to another hospital. They could find nothing to explain what was happening. They final sent me home with no answers. I couldn't walk for months or do anything. I found a nero doctor that has put me on a lot of different meds that seem to be working but there is still no diagnosis.

I haven't had to use buddy (the walker) or speedy (the wheel chair) in quite a while. I have about one seizure a week now. I have always had them at home, thank God and never in front of my children.

I have been helping at Roo's school. I work as a teachers aide in the preschool class and I love it. I was already close to the teacher because she taught Roo last year. I work in there on Thursdays and Fridays, 7-11. I then work in the office from 11-2:30. I love it. I was a Social Worker and Children's Crisis Counselour before my oldest was born and while I have enjoyed being home with the kids for five years, I was ready to get back to working again.

It's hard on me physically but it helps mentally to be out of the house and feeling useful. By Friday afternoon I am exhausted and there are times when it's hard to walk into the house. I usually go to bed and that's where I stay most of the weekend to recoup from the two full days I work.

The school has been great and I take breaks when I need to and the teacher gives me activities to do with the class where I am mostly sitting down.

I go back to the neurologist on the 14th of this month. He has basically just thrown medicine at me and it has worked for the most part. However, I want a diagnosis and I plan on pushing him to keep searching for one. It's hard because I don't have insurance to pay for the tests he needs to continue to run before he can get a diagnosis.

The great news is, I got the medicaid spend down card (not sure if I have mentioned that here) They will pay everything I owe, $30,000 I just have to pay $5, 000 of that, I have no idea how we will do that but God does. It's really up to the providers, they could just take what medicaid pays them and not make me pay any more. The card is just to cover April and May, unfortunately.

My seizure medication is being paid for by the drug company. I found a place here that is out of the university of Ky that helps people get medicine straight form the drug companies. That saves us $175 a month. I still have to pay $100 for my other meds but we have been able to do that.

I still have severe pain on some days and other days I am fine, I just never know what the day is going to be like. But I am so thankful that I am 100% better than I was in April, May and June. I take it moment by moment and I'm trying to LIVE life to the fullest in the good moments.

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Speaking of living, here's my LIVING post for the week.

Jose and I went out for our anniversary last weekend. We went to our favorite Indian restaurant and then took in a movie. I was having a good day.

Monday, September 7, 2009

I've been thinking about my list for this week since I did the first one last week when I discovered Holy Experience.

I have been at times dumbfounded of what to thank HIM for because there are so many things and when I think of the small things they just seem too insignificant and then the big things seem too obvious. I guess that is why I have never written them down. But with each one that I write I realize that God has blessed my life with big and small blessings and I want to acknowledge every one of them.

I'm starting slow and praying that God will open my eyes to ALL that I have to be thankful for because there is so much I know that I don't even see. I have a long way to go to get to a thousand, but it's just part of my journey. So here is 5-15, some are big and some are small but I am so very grateful for them all.

5. HE loves me even though HE sees all the cracks in my character and mistakes I have made and keep making.

6. For this blog that has forced me to really look at myself and see not only what I need to change but also and almost more importantly the good parts that I never saw because I was being too critical of myself.

7. My daughter who does everything I do, may I be reminded of that daily and be a good role model for her always.

8. Music, that expresses what I can not at times.

9. No matter what color I choose to dye my hair after a few washes it always turns back to the natural red. (yes my hair is the natural color in my header picture but I play around with it often, it's a control issue but that's a whole nother post)

10. My sister would turn 35 this month and I have kept her memory alive.
11. Her green work jacket that still hangs at the back of my closet, I swear I can still smell her on it and it brings me unbelievable comfort when I need it.

12. The days I'm able to work at Roo's school, I feel so productive and love seeing him throughout the day.

About Me

I'm a complicated girl trying to navigate my way through this crazy, beautiful, chaotic world. I'm blessed to have my best friend beside me, two crazy amazing kids who light up my world.
I've known tragedy and have faced some dark days. I depend on God daily to get me through this life. I've been away from blog land for a while but decided it is time to return.This blog will be about our family, our foster care journey and about me finding my way through it all.